Same Chapter…

February 16, 2013

The Same Chapter…Different Take

Crossposted at Jenster’s Musings

This past Wednesday was just another routine oncology appointment. Into the exam room walked a very dapper White Russian. I’ve only ever seen him in his white coat, but the other day he sported a yellow v-neck sweater, a navy and white checked shirt and a yellow tie with stripes in various shades of blue, all wrapped up in a natty tweed blazer. I commented on his Soviet swag, to which he replied he had lost weight and his coats were too big. He was waiting for his order of new coats to come in, but had gotten so many compliments that he was thinking of cancelling the order.

Once the fashion discussion was over we got down to business. And he started the real conversation with, “There was a study…

I really hate those words. They usually don’t bode well for me. Which is ridiculous because the reason I and my mother and countless other cancer survivors are healthy and/or alive is because there was a study. But the last few times I was told there was a study it meant something I had been working for, something that was at my fingertips, something I was happily looking forward to was yanked from my grasp.

Here is the opening paragraph of a press release regarding this study from the San Antonio Symposium held in December:

SAN ANTONIO — Ten years of adjuvant treatment with Tamoxifen provided women with estrogen receptor-positive breast cancer greater protection against late recurrence and death from breast cancer compared with the current standard of five years of Tamoxifen, according to the international ATLAS (Adjuvant Tamoxifen — Longer Against Shorter) study.

You can read the whole press release HERE.

Basically it says that there was a decrease in recurrence and/or death rates in the second decade (10 to 14 years) after diagnosis for women with estrogen receptor positive cancer who remained on Tamoxifen for ten years instead of five years.

The White Russian went on to tell me that his daughter is a fellow at Sloan Kettering in New York and their team determined (as is also mentioned in the press release) that this practice should extend to all adjuvant hormone therapies, i.e., Arimidex.

I’m not sure if it was my expression (I am happy to report I was not about to burst into tears, however I bet there was a “you can’t make me” look on my face) or if he really wasn’t sure this was the right course for me, but we talked about it at length. When I told him I often wondered if my issues were side effects or just a matter of my age he told me that I’m too young to have these issues. He also said that quality of life is sometimes more important than reducing a recurrence by a couple of percentage points.

This is a great example of why I am so fond of this doctor. Where I tend to downplay my discomfort and fatigue and myriad other annoyances, he justified them as real and life-altering problems that I shouldn’t be forced to deal with if I don’t have to. Well, that and when he said I was “too young”. I liked that part, too.

So we came up with a plan. I am no longer on the Arimidex and we’ll revisit this in six months. I wasn’t even disappointed that I have to go back in six months again, even though this was supposed to be my last six month appointment. It takes about three months for the Arimidex to be completely removed from the body. Hopefully I will notice a difference in the second half of these six months. If so then I will not go back on the medication. If there is no change I will resume the Arimidex for another three years.

Not entirely what I was hoping for, but I’ll take it. Now I’m just praying there will be a change. Not because I don’t want to go back on the drug – if these problems aren’t drug related then it doesn’t really matter – but because I don’t want these problems.

Once we satisfactorily concluded that whole discussion we went on with the rest of the exam. Which consisted mostly of us talking about our children and college and degrees and the like. He was very exuberant about Katie’s choice of Music Therapy for a degree and field, which I found interesting. This medical doctor – a hard science, bio-chemical type medical doctor – is all atwitter about this up and coming field. To quote him, “It’s been around for a while, but just in the past few years there has been so much literature about its benefits. It’s a really great field.”

The rest of the appointment was pretty routine, including the run through Starbucks for the obligatory White Chocolate Mocha for the ride home in rush hour traffic. I didn’t really want the drink, but there was no choice. The car automatically turns out of the cancer center’s parking lot and drives straight to the ‘bux without any concern for my own will. Really. I was glad for it, too, because it took me forever to get home. Never, ever drive from the general direction of Philadelphia at 4:00pm during the work week. Ever.

***

The second unexpected twist in this chapter came the following day when I spoke to a genetic counselor on the phone to get Katie set up for genetic testing. After a fairly lengthy conversation she told me that I was the one who needed the testing since I was the one who had the cancer. This seemed so contradictory to everything I thought I had been told, but her explanation made perfect sense. If I test negative for the BRCA gene we will know my cancer was not genetic, which means there is no reason to test anybody else. If I test positive, however, then others in my family may wish to be tested as well, i.e., Katie, Taylor, my sisters, etc.

My thought (though obviously my thoughts are not to be trusted) is that this is not a genetic cancer. My mother’s breast cancer was protein positive/ hormone negative and mine was the exact opposite. Most likely if it was a genetic thing we would have had the same tumor make up. The counselor confirmed my thought process, though it’s still not a sure thing.

So in a week and a half I will be meeting with her at 8:00 in the morning -I should have asked if I could bring coffee because, well, you know. It’s me we’re talking about and 8:00 in the morning is early when you have to be clean and presentable. – to go over an in-depth family history and all the fine details about my cancer, my mom’s cancer, etc.

***

To close out this post I want to tell you about an event I went to the night after I wrote The Next Chapter. It was a community night of prayer for some of our local families. One family in particular is a preschool and church family and they were given a devastating blow this past September. Their third child, Eli, was diagnosed with Metachromatic Leukodystrophy (MLD) – a horrific degenerative disease with no cure. MLD is genetic and it was passed on to him by his unsuspecting parents. They then had the other three children tested and while the two older boys are carriers and don’t have the disease, their preschooler, Ella, does have the disease.

As I sat there listening to their mother, Becky, I thought how petty my gripes of the previous day had been. I would take Arimidex, or chemotherapy, or anything every day of my life if it meant my children wouldn’t have to suffer. The heartaches I have been through have no comparison to what this family has been through and will continue to endure. But what faith and strength Becky has. You can read about it at her blog, Fear Not.

***

As for this chapter, maybe I should stop trying to figure it out before I’ve finished reading it and just let God do his thing.


The Next Chapter

February 7, 2013
Crossposted at Jenster's Musings

The-Next-Chapter-1-470x264

 

I am staring at a new chapter of the cancer chronicles. It’s not a bad chapter, precisely, but it has me feeling a little uncomfortable. Or maybe restless. Or maybe I just don’t know what it is I’m feeling.

Next week I see my oncologist for my last biannual appointment. That is a great thing. I am nearly 8 years out from diagnosis and over 7 years since my first No Evidence of Disease report. That is a survivor’s dream.

There are only a few days left of my Arimidex and I won’t be refilling the prescription. Two years of Tamoxifen followed by five years of Arimidex and I’m finally done. The original plan was to be on post-chemo drugs for a total of five years, but somewhere around year four a study indicated that it was best to stay on the Arimidex for five years regardless of how long Tamoxifen had been taken. That was a huge disappointment at the time (worthy of a few tears), but the extra two years are done and I can finally stop the Arimidex.

Earlier this evening I was reading stories from women who had gotten off the Arimidex and how their lives were improved. More energy, weight loss, decreased stiffness and pain, slight reversal of some menopausal symptoms… all things that I deal with to some extent. I want to be excited about the prospect of a better quality of life, but I’m afraid to. I am 47, after all. I’m not supposed to have as much energy, weight loss is supposed to be more difficult, stiffness and pain are just a part of growing older and menopausal symptoms are what you get when you’ve had your ovaries removed, right?

So what if I don’t notice any difference in any of those areas after I stop the medication? What if all my “symptoms” are just a result of my age? I can tell you right now that if there is no improvement I will be just short of devastated. And incredibly furious. Again. The injustice of cancer has a way of causing righteous anger even still.

I was talking with two of my co-workers today and I told them that I don’t want to be a “new” me. I just want to be the old me. The me that I was at 39. Or more specifically, the me that I would be today if I hadn’t been derailed by the monster. Of course, I have no idea what that me would be. I just know it wouldn’t be the me I am. But maybe I’ll be much closer to that me after I stop the Arimidex. I guess time will tell.

There’s more to this chapter than this, though, and it goes beyond my own personal battle. This afternoon I started the process to get Katie genetically tested. When she was about 13 my oncologist told me that I would want her to be screened when she was 18 because some of her life choices would depend on whether or not she was genetically disposed to breast cancer. At the time 18 seemed so far away.

It hurts my heart that I’ve done this to her and Taylor. We don’t even know if this is genetic, but just the fact that Katie (and possibly Taylor) has to go through the testing is more than I think either of them should have to go through. I feel responsible and guilty and I’ve never been one to feel guilt over much of anything. But this? I want to heap burning coals upon my head. Even though I know it’s not my fault. And yet…

I know I’ve said this time and time again over the past 7 years, but I really thought once I was through with treatment and reconstruction everything would be normal again. What I have found is that cancer has a ripple effect and I will never be completely free from it. And sometimes that’s exhausting.

But then I remind myself that I don’t have cancer and I am healthy, quirky aging and/or side-effects aside. Even more important is that my children don’t have cancer and they are healthy. I have a husband who adores me, kids who love me, great family and friends and I am happy.

So next week I’ll go see the White Russian and he’ll say how great I’m doing and he’ll send me for a dexascan to see where my osteopenia is (that will hopefully eventually be reversed since I’m stopping the Arimidex) and then he’ll tell me that I don’t need to come back for another year (which will make me happy and sad all at the same time). And sometime soon Katie will go get tested to see if she has the BRCA gene (which I don’t think she does) and she can then make the educated choices that a young woman needs to make.

And then I can move on to the next chapter.


Seven Is A Perfect Number

May 3, 2012


Jewish tradition declares the number seven is perfect. So today I share seven thoughts.

1. Seven years ago today I woke up with butterflies in my belly because of what the day held for me.

2. Seven years ago today the surgical waiting room at Baptist Hospital in Little Rock was overrun with people praying for me, laughing and telling lies exaggerated stories about me and eating my peanut M&Ms.

3. Seven years ago today I sang “I Want To Be Sedated” as the attendant and nurse wheeled me into surgery.

4. Seven years ago today a cancerous mass, my left breast and several lymph nodes were removed from my body.

5. Seven years ago today somebody stole the breast cancer awareness car magnet from my van in the hospital parking lot.

6. Seven years ago today I began an unwelcomed journey, but one in which I learned a lot along the way.

7. Seven years ago today I decided I would not be bested by something as evil as cancer.

It may not be a perfect list, but I sure do love being able to say I’ve been cancer free for seven years.

Crossposted at Jenster’s Musings


Sh*t Girls Say to Girls with Breast Cancer

March 2, 2012

Heart Like A Balloon

December 14, 2011
Crossposted at Jenster’s Musings on December 9, 2011

Last night as I sat down to see what was new with my Facebook friends I whooped it up when I saw my friend, Shelley, hit her five year no cancer goal. I’ve known Shelley for what feels like forever. She’s the little sister of my junior high, high school, matron of honor, etc. partner in crime friend, Cathy. Two memories of Shelley from back in the day: 1. She could recite pretty much all of 16 Candles; and 2. She could do the entire “Thriller” dance.

I know exactly how she felt yesterday. You get breast cancer, you have surgery and go through treatment, you slowly get better and each time you have an oncology appointment you come away happy to know you’re not showing any evidence of disease. And then you hit that five year mark and your chances of recurrence or metastasis dramatically drop. You can see many more wedding anniversaries and children’s milestones far into your future. And, even though you hadn’t really been worried about it, you’re relieved and excited and happy and feel like celebrating.  I’m pretty sure champagne was involved on the West Coast last night.

My heart soared.

As I continued to peruse the statuses I came upon one from a Mothers with Cancer associate. That’s when I found out another one of our writers, Judy, had been admitted to hospice. Judy was diagnosed with inflammatory breast cancer in December of 2007 and determined in remission the following year. Nearly two years later, November of 2010, she was found to have a recurrence and she fought it with everything in her. And there was a lot in her! A lot of faith, a lot of courage, a lot of strength and she wrote about her experience with so much raw vulnerability and authenticity that you couldn’t help but know, admire and love her. She also wrote about the fear and the pain and the sadness and her desire to be a mom to her young son and a wife to her loving husband.

My soaring heart plummeted.

This morning I found out that she passed away last night. I never met this woman in person and yet I feel such a strong connection to the women of Mothers with Cancer. Every time we lose one it’s like losing a part of myself and I daresay it’s the same with the other contributors. She leaves behind a devoted husband and a 10-year-old son – probably the biggest fear of a Mother with Cancer.

My heart now feels deflated.


A Picture Is Worth A Thousand Words

April 5, 2011

By Jenster

A few weeks ago I had a scare of epic proportions. I thought I had lost all my digital photo files from 2004 through 2008. That thought made my stomach hurt and my heart ache and I couldn’t concentrate on anything until my hero husband found them on a back up drive. Oh, how I love having a former IT guy for a spouse! After the photos were recovered and put in the home they belonged in, I spent a good portion of my day just looking through them.

In 2004 we took a great family vacation to Durango, Colorado and Taos, New Mexico and a few points in between. I cherish the memories of that vacation and I adore those pictures. My kids were 9 and 12 and I remember thinking how big they were at the time. Looking at their abundant smiles in those photographs I would say they enjoyed that vacation as well.

The pictures of my son from May 2005 through July of 2006 were a lot different. Looking through those photographs made me realize just what a difficult time that was for him. The smiles were a lot fewer and even when there was one it very rarely reached his eyes.

Taylor turned 13 the Saturday between my Wednesday diagnosis and my mastectomy the next Tuesday.  A couple weeks before that he had been crushed when we told him we were moving from Arkansas to Pennsylvania. After all, when you’re in 7th grade you pretty much have your entire life planned and it normally does not include moving away from all your friends.

The following year was hard on everybody and maybe especially Taylor – a 13-year-old boy who only got to see his dad every weekend at best and whose mom had cancer. Not only that, but he knew once I finished treatment we’d be getting back to our original plan of moving.

Our family was blessed beyond measure during that year. We had so many people taking care of us, including friends who would come get my kids and take them to the pool or the movies or the water park or just to their house for some normal, ordinary fun. Katie had an awesome support system at school, Taylor had a great support system in his junior high youth group and both were bolstered on Sunday mornings and really, I think they both did a phenomenal job that year. They loved on me and took care of me and very rarely gave me any problems. But those pictures tell a little bit different story than what I perceived during that time.

I think it’s safe to say that the teenage years for any kid have their challenges. Add to those typical strains several life changes and it makes for a pressure cooker. So which is it the pictures reflect? Just the usual teenage angst or a kid with the world bearing down on him?

When we finally did join Todd in Pennsylvania after a year-long separation, Taylor was both relieved to be a family again and disappointed to move away. While his sister had made a friend practically before her feet ever hit her new driveway, his friendships took a little longer. But before too long he met a couple of guys in the youth group at church and once he started the 9th grade three months later, he met some kids at school. By the end of that first fall he told me he hoped Dad didn’t get transferred back to Arkansas because he really liked it here.

When I look at pictures from mid-2006 on he looks happy. His smile reaches his eyes. Five years later he’s a freshman in college and instead of the world bearing down on him, he’s taking all the world has to offer. Not only is he very happy, he’s fulfilled. He sends me and Todd texts just to say “I love you”, and when we get to see him (not enough to my way of thinking) he hugs us both like he’ll never let us go.  I miss him terribly and yet I’m so full of joy and pride. What an incredible young man he’s turning out to be.

I won’t sugar coat it. That was a horrible year. As all the moms who write for Mother’s With Cancer will tell you, our ceaseless concern is what this life crisis is doing to our children. Don’t we all want to protect our kids and make sure they’re safe and happy? Unfortunately, life doesn’t always work that way.

 I am proud of both my kids and have come to the determination that they are who they are not in spite of our catastrophic year, but because of it. Not that I don’t think they’d be spectacular individuals without that experience; however, I do believe it played a part in developing their character. While the pictures of a forlorn teenage boy break my heart just a little, the knowledge that he’s better than okay today soothes my soul.

Crossposted at Jenster’s Musings


A Little Light

October 30, 2010

by Jen(ster)

Yesterday’s news was a blow for most, if not all, of us. Cancer has taken another mother away from her children and it hurts. I don’t know about the other writers here, but I’m guessing it shook them up just as it did me.  Just like the others who are gone, every post or comment by her causes a hitch in my breath.

Shortly after I read the news about RivkA I received a message from Cindy’s sister. (I wrote about Cindy HERE.)  It didn’t say much, but what it did say was huge. Only one lymph node out of 14 was cancerous.

While I mourn for RivkA’s family, I rejoice for Cindy’s. Her first battle with cancer was an extremely tough fight for her and this time might just be a little easier.


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